Left feeling confused after my follow up appointment post laparoscopy.

[Bagel96]

I had my first laparoscopy back in July where I was diagnosed with endometriosis which was apparently widespread and quite a lot but not deep infiltrating. I finally had my follow up post surgery Saturday with the gynaecologist who completed my surgery. I feel a bit lost now. He had put me on dienogest straight after my op which I have took since. I raised concerns of increasing headaches/migraines since being on dienogest and also sleep/mood issues. The gynaecologist said there is no way the dienogest would be causing this. I also explained pain from my left groin area down my leg has been more persistent since surgery (before was only around the times I bled) he also completely disregarded that being anything to do with surgery or endo.

Bottom line he basically told me to stay on dienogest forever and only come off when trying for a baby. Assif this is my only option going forward, also discharged me from his care. I feel a bit confused as to should I really continue taking something which is causing headaches? Do I really have to be on medication forever?

What have other peoples treatment options/ long term plans been to manage endo? X

[BlackPugs93]

Hello😊

I was put on dienogest and believe it gave me weird blurry vision. It started like 10 days after taking it and I stopped taking it after 2 months and my eye symptoms were mostly better the next day. It’s not resolved completely yet though so going back to the GP.

I also had headaches and didn’t realise until I stopped it that it was affecting my sleep. My mood was up and down and I was really tearful (I flipped out and cried cus I didn’t understand how to play a board game!!!)

I have just had a follow up and I’m trialling tranexamic acid (for heavy bleeding) and mefenamic acid (for pain) which I’ve been told to take when I’m on my period. My doctor thinks I’m intolerant to progesterone and she thinks this is why I’ve always struggled with side effects of hormonal contraception. I used to have bad migraines as a teenager so was told I couldn’t take the combined pill. However, my doctor said should the new meds not help, my next option is a low dose combined contraceptive pill. If that didn’t work there’s another medication which stops the ovaries from working but this would be a very last resort as I’m only 30 and unsure if I want children.

I’d definitely see if you could get another opinion to discuss your options as there could be other things out there for you. Sorry for the long reply but I thought I’d share my experience. I hope you can find something suitable for you xx

[Bagel96 in reply to BlackPugs93]

Thank you for your response! Yes I know from past experiences I have always seemed to not agree with any hormonal contraception, not sure if maybe I’m a bit intolerant! I’m going to stick to it for another few months to give it the best chance of settling as I must say I appear to have stopped having periods on this completely which feels like a bit of a blessing! If not il try get a second opinion. I do hate the thought of having take medication forever would much rather not need to.

[BlackPugs93 in reply to Bagel96]

Since I was 18 I tried various mini pills, had 2 Mirena coils and 1 implant. They all gave me irregular bleeding for weeks on end but they all affected my mood so bad. I’d feel anything from emotionless, to paranoid, anxiety, probably a bit depressed. I stopped all hormonal contraceptives about 3 years ago. I hadn’t had a proper period for close to 10 years and I started noticing around ovulation my mood is really badly affected and I literally have zero motivation and suffer mood swings. I also get quite a few other PMS symptoms from ovulation to my period. She said some people just don’t tolerate their own progesterone so adding the contraceptives make it worse. She’s asked me to keep a symptom diary over the next 3 months to keep track of how I’m feeling

[Bagel96 in reply to BlackPugs93]

Yeah I have had a similar experience trying numerous pills, implant, patch and depo injection. I would ideally not be on anything if I could help it but from what the consultant said it sounds like the endometriosis would just run riot without any hormonal control. Hopefully we can find something which works for us!

[BlackPugs93 in reply to Bagel96]

Yeah I guess the meds I’m now on just control the symptoms rather than preventing new endo from forming unlike dienogest and the other hormonal treatments

[JOSANDY40]

Hello,I couldn't take the Pill due to werid eye and head feelings. Pain in legs.

I suggest to get a referral to see another Endo Specialist.

I went onto Zoladex but its expensive about £800.00 + per injection implant. Yes the first 2 mths were werid but but better than the Pill. Weight gain about a stone. It didn't fix all issues with Endo but I was able to lead a more normal life and hold down a job. I still grew cysts. I still had some pain. I slept longer. I looked fitter.

There is no 100% with this disease!

When I got to 40yrs I couldn't work any longer cos of pain and nerve damage caused by Endo or 6+ operations, organ damage, pelvic distortion. I had stage 4 Endo by 26yrs.

My best wishes

[Bagel96 in reply to JOSANDY40]

Thank you for your response, it is nice to know there seems to be more options to try other than just stay on dienogest even if it does no agree with me which my gynaecologist seemed to make out. I will keep on with it for a little longer but will ask for a second opinion if I feel like it’s still not agreeing with me!